Common sense is not common
The Herald on Sunday features an interview with Nigel Latta by Deborah Coddington, weirdly condensed into this brief about Oppositional Defiance Disorder.
In the full print story, Latta dishes out jumbo servings of his usual faux common-sense parenting advice, lurching into this bizarre statement:
“But I’ve been around the family area more than 20 years, long enough to watch fads come and, and now there are huge numbers of kids being told they have features of autistic syndrome disorder [sic].
“Without doubt, autism exists. I’ve seen good research on that. But people who don’t know enough about it are diagnosing it. I don’t know enough about it to diagnose it or work with children who have that diagnosis, but I know people who know a lot less than me who are diagnosing it – kindy teachers, teachers, psychologists, therapists.
“This is a small country, with a small number of people qualified and able to diagnose this. Right now, there are lots of kids who are not autistic, they are just different, but what happens is these parents have these labels thrown at them.”
So Latta, who can’t even get the name of the condition right, knows more than those unnamed “psychologists” and “therapists”? I think it’s actually quite clear he doesn’t, and that he knows very little about how ASD diagnoses are actually made in this country.
“Just different,” can indeed be a reasonable proxy for autistic spectrum disorders at the milder end of the spectrum, but that hardly means a diagnosis is irrelevant. In my experience – and I have two very different children diagnosed as Asperger Syndrome via very different routes — a diagnosis, correctly given, is a gamebreaker.
It is but a systematized collection of related symptoms – not all of which will apply to your child – but it gives you somewhere to go. Somewhere that will almost certainly lead to something better than Latta’s feeble “common sense”. So allow me to point out to Nigel Latta that children who are “just different” may well have a very different idea of what is common and what makes sense.
Update: The full story has finally been published online.
Ben Wilson wrote on March 4th, 2010 at 3:03 am:
That is indeed weirdly condensed.
And what a strange angle – “I don’t know how to diagnose it, so that means only a few other people can”. Doesn’t follow.
I found the diagnosis in Marcus interesting. It was given by someone who certainly is a specialist. One of the therapists was rather annoyed about it, feeling that it was made on flimsy evidence, and probably should have been done in consultation with them, considering the hundreds of hours they had spent with him. I think her annoyance mainly came from the feeling that the diagnosis doesn’t really help much, but it can cause alarm. Certainly it alarmed my wife. Me, less so – I had been expecting something of the sort. But I didn’t really feel that the potential alarm of the diagnosis outweighs the chance that it might be quite right, and it’s a heads-up to learn more about the condition, and be prepared. It also opens a lot of channels of help, both for Marcus, and for us.
Nigel Latta wrote on March 10th, 2010 at 8:20 pm:
Usually I just ignore this stuff but I had a moment to kill and this just annoyed me. A couple of things… I am well aware of the correct name for the “condition”. Is it possible, do you think, that I was misquoted? If it is then the whole premise of your post seems a bit… well… wrong. Secondly, you miss the point I was making (willfully or not) which was that parents are incorrectly being told by unqualified people that their children have “autistic features” when they don’t. This helps no one. The diagnosis of autistic spectrum disorders is a specialist field, and therefore, should only be made by suitably qualified and experienced professionals. I have no issue at all with the diagnosis, I just think the only people making it should be actual specialists and not lay people. Seems common sense enough to me, and not even the faux kind.
Russell Brown wrote on March 11th, 2010 at 10:42 am:
Thanks for dropping by Nigel. I’m sorry you were misquoted, but I can hardly be expected to guess that.
I don’t resile from what I wrote, at all. You were grandstanding in that interview, and your dismissal of “kindy teachers, teachers, psychologists, therapists” who allegedly know less that you do was self-serving.
I have two teenage sons who are Asperger. As it happens, our older son was diagnosed subsequent to a referral from his kindergarten, where teachers sensed there was something unusual going on. The diagnosis, not long after Aspergers had entered the DSM, briefly took us aback. You know what we said? “Oh, but that’s just him. He’s just different.”
That lasted about an hour until I found Barb Kirby’s wonderful O.A.S.I.S. website, whereupon things fell into place. We were able to move on from there, and eventually got ORRS support. It might have been easier in the present day, now that the condition it more widely understood. So I don’t relate to your idea of diagnoses being “thrown at parents,” at all.
Our younger son was diagnosed later — again in a formal, specialist setting. That was a bit of a shock. But I feel lucky that we were in Auckland, were we were at least able to get a timely assessment. I’ve known people in other centres desperate to get a formal diagnosis.
Are there informal diagnoses being made in classroom and clinical settings? Yes. Are some of them wrong? Sure. But I regard that as a lesser evil than a child who may have a profoundly different experience of the world being overlooked or held to standards he or she cannot meet. We suffered through inappropriate behavioural strategies for years (notably from one particular GSE worker) so I tend to think of a broader awareness of ASD conditions as an improvement, on balance. Even a child who doesn’t meet formal diagnostic criteria might display some symptomatic behaviour, and benefit from some more nuanced thinking about what makes him tick.
After a lot of soul-searching, we did opt for medication for our younger boy — a low-dose SSRI to treat his disabling anxiety (this is an increasingly common off-book treatment for adult Aspies, but that will be his choice) . We also removed him from school. The improvement was profound. We don’t know what the future holds, but we have gone from three years of near-daily meltdowns to a loving, open family life. I’m just glad we were smart and strong enough to resist the behavioural solutions pressed on us by some people (including, unbelievably, sending him to a residential facility).
We’re not pushing our children to be “normal” — parents who do that wind up in some bad places; they’re often grieving for the children they didn’t have. I know my children are different, they know they’re different. An ASD diagnosis has helped us understand how they’re different. A personal level, it’s helped me understand how and why people can be different, and I’m grateful for that.
The post above was fuelled to some extent by a recent radio interview you did, in which the concept of common sense was extensively aired. After nearly 20 years of autism in the family, I’m all too aware of the limits of “common sense” in our job of parenting.
There’s a forthcoming story in North & South magazine that looks at all these issues in an informed, rounded way. I hope lots of people read it. In contrast, Nigel, I just wish you’d be a bit more careful about what you say in the media.
Nigel Latta wrote on March 11th, 2010 at 12:36 pm:
Fair enough that you didn’t know I’d been misquoted, but you will have to forgive me for getting a bit tetchy when I’m faced yet again with someone I actually agree with, having a crack at me for things I don’t believe. I made the comments because I’ve seen increasing numbers of parents who have been told that their children have autistic features by lay people when they do not. Just as misdiagnosis is damaging for families of ASD children, it is also damaging for families where children are not ASD. No one is helped by misdiagnosis. No one. I wasn’t trying to grandstand but was trying to say exactly the opposite (ie “I don’t know enough about autism to make an accurate clinical diagnosis, but I at least know enough to know my limitations in that regard. I have come across a range of professionals who make this diagnosis who shouldn’t because, like me, they aren’t sufficiently qualified to do it”) I didn’t see that as grandstanding but rather was trying to make the point that we need to lift our game. Clearly I didn’t do a very good job of expressing that. I completely and unreservedly agree about the need for more understanding and information because I too have seen the suffering which ensues when professionals get it wrong, albeit not as a parent. I do believe that common sense isn’t that common anymore when it comes to raising children, but I also believe that common sense dictates that children with special needs, be that ASD or anything else for that matter, deserve to be seen by people who really know what they’re doing. I’ll try and do a better job of expressing that next time.
Hilary wrote on March 11th, 2010 at 2:22 pm:
I’ve seen drafts of short electronic resources that have been developed from the NZ ASD Guideline work which will provide useful information about identification and diagnosis. Separate resources for clinicians, parents and others. They are being released soon (April I think) and will be widely available.
Russell Brown wrote on March 11th, 2010 at 6:35 pm:
Thanks for responding, Nigel. As I’ve said offline, the story did anger me, but I appreciate your willingness to debate it.
Essentially, my point was that incorrect diagnosis isn’t the biggest problem in this sphere; far from it. Might we agree on that?
Nigel Latta wrote on March 12th, 2010 at 3:37 pm:
We can agree on that, but I still wouldn’t want to lose the point that it isn’t the smallest problem either. I’d just rather we lifted our game and got it right for everyone.
geared wrote on March 22nd, 2010 at 10:55 pm:
if there are only a few people in nz qualified to make a diagnosis of aspergers, who are they please??
can a through assessment be done by a ’specialist’,
just by spending an hour talking to an adult suspected of having aspergers, without talking with the persons partner,family etc..without doing any other testing like, if a person understands facial expressions, social interaction etc.
Russell Brown wrote on March 23rd, 2010 at 4:55 pm:
To be honest geared, at both our formal assessments (even back in the old days) I knew every question I was going to be asked. By the time it happens you’ve spent a long time thinking about it.
Which is where I take issue with Nigel. A teacher who’s spent six months managing a kid has had a lot more time interacting and observing behaviour than a diagnostician will ever have. I tend to think an experienced teacher suggesting that Asperger’s is the issue isn’t such a bad thing. It’s what leads to a formal diagnosis.
geared wrote on April 2nd, 2010 at 10:32 pm:
a friend had an assessment done for AS, cost $400 and lasted only an hour..the ‘result’ was a diagnosis of depression, and a prescription for medication..there is no denial that this person suffers from depression, but it is mostly caused by the social and communication difficulties they have had to deal with all their lives..the assessment failed to uncover anxiety issues, low tolerance to stress etc; the employment problems,its a bit hard to find work when you dont like dealing with people; the housing problems due to lack of money and employment..
this person is currently trying to live on $250. a week due to having a breakdown, $150 of that is taken out for rent, the rest is to pay power,food,water,transport,medical etc..no wonder there is such a high occurence of suicides amongst AS adults..its so bloody hard to get ahead when there is a lack of help, understanding, acceptance and tolerance etc. this lack of understanding and discrimination, is very alive and well in the medical/health/goverment related sectors.
John at Asperger's Syndrome NZ wrote on May 6th, 2010 at 11:22 am:
My child’s ‘difference’ was spotted by a kindy teacher aide 8 years ago. The aide kindly and quietly suggested he be assessed. The aide’s supervisor disagreed and was tempted to discipline the aide. An extremely qualified paediatrician, a Kiwi autism diagnosis pioneer, promptly diagnosed my son as having Asperger’s Syndrome and congratulated me. I will always be grateful to the young inquisitive observant well-trained aide.
Turns out my boy was different, and quirky -all the time. Wonderfully so. But I would not term his condition ‘mild’ when the correct words are ‘profound’ and ‘encompassing’. There are times, at transition points and crises, when only the phrase ‘less-severe autism’ suffices too.
The world has fundamentally changed. These children who decades ago could ‘slip through unnoticed’ in a classroom, home or workplace setting are no longer able to remain invisible.
‘Common sense’, best defined as the immediate apprehension of the bloody obvious, dictates that a profound difference be enquired into, acknowledged, accommodated and allowed for, at least to the degree the more flexible 99% of the population is willing. But that’s the real beef here isn’t it. Some aren’t.
And that’s why I started Asperger’s Syndrome New Zealand – just for us autists with lived actual experience of the creaking painful raphsody that is Asperger’s, because my son and I were fed-up with all the utter crap being mouthed about ‘cure’, ‘disorder’, ‘mild’, ‘fad’, ‘dangerous’, ‘ABA’, ‘savant’, etc., and we quietly proceed knowing the biggest issue in autism today is really about making a place for the displaced. And that is not going to happen – ever – without us all being asked how to.
Lyn wrote on November 16th, 2010 at 9:38 am:
This discussion about aspergers is interesting, but I have a son/son age 36yrs who have undiagnosed ASD.The question is how and where can they be assessed and assisted. There are other ASD kids in the extended family, yoynger and diagnosed but those in the pre diagnosis age groups don,t seem to have access to anything and this is very difficult for them AND the family. We need help for the kids an us